To ask parents of autistic children...?

[AlmostAWife]

*Name changed for this
When did you start to think they might be on the spectrum, and why?
What were your signs?

Thank you

Mine is 3.3 and has SPD, but at the request of his preschool, we are about to start an evaluation for ASD.

As a baby he:

Had colic/silent reflux and cried non-stop.
Did an uneven bottom shuffle.
Waved and pointed late.
Only recently mastered stairs and still can't pedal a tricycle.
Hated change in routine and strangers trying to interact with him, although he always was and continues to be very affectionate with close family members.

At three he is social and funny with us, but cannot mix with other kids and blanks strangers when they ask him questions or else gives inappropriate, off-topic answers.
Loves to talk about a narrow range of subjects (Thomas obsessed and knows every train, carriage and storyline).
Hates changes in routine or going somewhere unexpected.
Throws the most horrendous tantrums when he is feeling overwhelmed or goes somewhere new.
Bashes into us with his head and runs in circles, which we think is sensory seeking rather than misbehaving.
As a baby, he flapped his hands like mad, especially at the washing machine and vacuum.
Good language skills overall, but limited social language skills and regularly mixes up pronouns.
Rigid, rigid, rigid.

I've suspected something was wrong since three weeks, and am watching 10-month-old DS2 like a hawk.

Again I'd like to say thank you all so much for not making me feel ridiculous. I've been out this evening and come back to all these messages.
Some of you raised points that my DD does too that I'd not mentioned, like with food it seems to be either an obsessive thing, or a texture thing rather than fussiness.
She can never seem to sit still, ever, no matter what we try and get her to do.

I think I am going to raise concerns with my GP, I now feel like perhaps I am not worrying over nothing, and that just because she isn't presenting in a typical way, or the way I am used to, it doesn't mean that she isn't presenting at all.

I do feel as another PP said, that there are at least some sensory issues. DD is 2 years and 7 months and is the only child I know of that age that still likes to be swaddled. Along with the pain stimulation ( I really do feel thats's what it is when she wants to be smacked etc) I feel I at least have cause to raise a query there.

In regards to lack of empathy, I agree that it's not a 'typical' sign in my experience, my brother is exceptionally empathetic, and so is my DD, she borders on ridiculously so, crying when cartoon characters are crying for example, she gets furiously upset when they are. It seems overboard to me, but for her it seems to be entirely natural.

I feel a lot better for talking to all of you and seeing your personal experiences. Thank you for sharing them with me.

Dd was talking in fluent sentences at 14 months, reading independently before she was 3, sorting everything at 18 months, perfect size, colour etc, all in straight lines

We thought 'isn't this wonderful, we have a very bright child'

Only downside was she never slept

In primary school she was very sociable, would play with anyone, but was always on the periphery of social groups
She was quite bossy and hated working in groups
She also displayed anxiety when routines changed

She's now 13 and only now are we going through the process of diagnosis but I've been told its highly likely she will be diagnosed with high functioning Aspergers

One important thing to remember is autism presents very different in girls than boys. Dd is HUGELY anxious and her emotions are set way higher than ds. What wont not her him will set her off like dynamite. I think that's quite common in girls with ASD.

Ds is now 11 and was diagnosed at 8 after 3 years of assessments after I felt like nobody took my concerns seriously:(
Noticed nothing out of the ordinary until around 3 when ds started nursery, though his speech was limited.
He was obsessed with Egyptian hieroglyphics after finding a book and then street sweepers and many things since!
So now after doing great in his sats, ds is in year 7 at a big secondary school, getting there independently 2 buses each way and doing really well.
I'm very proud to call him my son, he's proved a lot of people wrong:)

AlmostA, when you said it's texture with food that set bells ringing. Because that is a classic, and I do mean highly typical, sign of dyspraxia. You can contact the Dyspraxia Foundation for more info but - I have this one son with dyspraxia and atypical autism but two other sons are 'just' dyspraxic. And the not being able to cope with certain textures is classic dyspraxia.

The sense of touch is, one doctor told me, as deeply affected in some dyspraxic kids as the sense of sight is in the visually impaired.

My son was complicated as he had both dyspraxia and autism. Whilst the textile thing is highly dyspraxic, so can be preferring foods of certain colours. My son would only eat white, dry foods for a couple of years til some intensive help at his special unit got him out of it (now kids with special needs are lobbed into the mainstream, this is the kind of help they miss out on. The special unit teachers would sit with him throughout lunch, encouraging him to try new foods. Mainstream teachers can't do this kind of thing and often aren't trained to).

Thank you Joffrey Again, this is something I wonder about, if not necessarily autism, then something else.

The more time goes on the more I think she is not just a typical two year old... But no one else seems to see it, just me.
People tell me she is 'difficult, high spirited etc' but not one has mentioned autism/adhd/dyspraxia etc so I'm left thinking that if I am the only one to see this behaviour and feel this way, then I must be over reacting...
I'm so pleased that some of you have said that you seemed to be the only ones to notice, as it makes me feel slightly less irrational.

According the the M CHAT R, DD is scoring at 0. Which seems to mean she's unlikely to have autism.

I still think I will raise concerns with my GP as I'm not convinced she is a 'typical' toddler.
Even if all it does is prove me wrong and sets my mind at ease.

What's the M CHAT R?

It must be utterly terrifying to see your child regress. I feel so much for all of you who've been through this.

Ds was slow on speech and at 3 was barely speaking. At one point eye contact was limited although this improved overnight when I cut fruit squash out of his diet (I think he was reacting to the aspartame.) his shared attention was limited and he didn't appear to understand a great deal.

At 9 he is gorgeous. Compliant, affectionate and with a lovely sense of humour. He still has a language processing delay but we're a million miles further on than I'd have imagined at 2. He has no formal dx but lots of hfa traits.

I wouldn't put too much weight on the M-CHAT. I can't remember exactly what my DS scored on it, but definitely at the 'no cause for concern' level. He was diagnosed with autism when he was nearly 5.

My DD met all her milestones up to the age of 1. By 15/18 months I was concerned with lack of speech development.

Aged 2 she was still not speaking, had no interest in other children, it was as if she didn't see them.

Going to toddler groups made me even more worried. She would lie on the floor staring at the lights, oblivious to activities, other children, singing, story time. When she wasn't lying down in a trance like state she was running round and round the room.

She was diagnosed just after her 5th birthday. Now aged 6 she is holding her own in mainstream and is verbal, although speech is still unclear and immature for her age.

And I'm going to say this again, because when my son was young I would have loved someone to tell me this... If you get a diagnosis, it is not the end of the world, although it does feel like it at the time. Nearly 19 years since we got that diagnosis and I can remember we were walking round like zombies, just utterly numb and in shock. And now he's 21 and at university. Living over 100 miles from home, in halls and coping!

At 1, he had 5 words. He passed a whole battery of developmental, cognitive and other tests as "normal". By 18 months he had lost every single word. Every one. Even "mum".

Meant to add OP, at your daughters age my DD had no joint attention and would drag my hand to things she wanted.
She has good joint attention now. It improved in line with her speech.

Forgot to add but, at 21 .... he NEVER shuts up.

I don't ever describe ds1 as autistic, and I ask people who know him/ work with him to do me/ him the same courtesy. It's not the biggest issue in the world but my personal feelings are that he is a child who has a condition, rather than 'being' that condition. I don't describe my mother as 'Sarah the diabetic' or my MIL as 'Jane the gammy leg'! Semantics, I know, but it means something to me. My son is a child first and foremost.

He was diagnosed with autism at 23ms and I started to really worry about him at 15ms (and was duly ridiculed by everyone around me!) due to his lack of speech, lack of receptive understanding and lack of interest in interacting with family/ other children.

With hindsight I realised other significant things I hadn't been aware of, such as lack of pointing/ shared attention, throwing my hand towards things he wanted, and lack of imitation.

RumbaRumba, here's why I would refer to my DS as autistic.

musingsofanaspie.com/2014/06/18/the-logical-fallacy-of-person-first-language/

I know the issue of person first / identity first language has been discussed a lot on a different thread recently, but this is a really interesting blog post by an autistic woman.

Thank you JoffreyB

OP, good luck at the GPs. I hope you get the help or reassurance you need.

I always say that if you are worried about your DC you should ask your GP.

Lots of NT DC have characteristics that are found in DC who have autism.

I have to be honest and say I had no idea DD was autistic when she was a baby/toddler. She met all her milestones, was bright and chatty and the only thing was that she didn't sleep.

At nursery she had problems sociising but at that age I had no idea it was unusual. She also used to get very emotional and scream in the mornings when I left her but the nursery staff, who so had no clue anything was amiss, told me that I wasn't giving her enough attention and I felt terrible for ages!

She stimmed and flapped, but I had no idea what these meant and just thought they were little quirks that she had. Honestly, I was a newly single parent to a 2 year old and a one year old and just trying to survive and had no idea at all that this stuff was significant

It was when she started reception that her class teacher took me to one side and said they had some concerns and were going to make a referral to the autism assessment service that I had any idea. I was in utter shock.

Of course as soon as I started reading about it, everything about her made sense - her eye contact, emotional outbursts, stimming, flapping etc, lack of sleep, refusal to play with toys. Once I had a context for it, it made sense.

She was diagnosed in May this year, age 7. I am eternally grateful to the school for picking up what I couldn't!

Going to weigh in on the terminology thing. My understanding of this, based on contact with the highly politicised end of the autism community, where autism is considered to be something a person is rather than something they have. To say a person has autism is akin to referring to a gay person as "a person with homosexuality" or "a person who has homosexuality". Sounds odd, eh? It comes down to whether you feel that autism us a condition that is bolted on to the person as an afterthought or whether you conceive if it as being integral to who they are. Personally I can definitely see the point of this. (Son diagnosed at five and a half by the way. One year after I approached the gp with my concerns. Nobody else - family, friend or professional - ever noticed or said a thing. Trust your instinct! My boy is fab and I genuinely would not change him. He just needs help, and he is getting this. A diagnosis is the beginning not the end of anything!)

DS2 sees his ASD as an integral part of his identity. His perception of it is positive. He isn't fussed about the wording, but is quite upset and offended if people talk about curing autism.

Balaboosta, Why do you think you have to weigh in? It sounds so aggressive.

For me there is such a thing as over thinking it all and personally I'd much rather spend my time getting on with helping my son through his day than spend time on the politics of how to describe him.

I really couldn't care less how people refer to my DS as long as its not to say he's a retard or the likes.